Grey areas in community-based research with rural Alaska Native partners
Authors: Clemma J Muller
Journal: The Lancet Global Health (2022)

In The Lancet Global Health, Susan Emmett and colleagues present compelling evidence in favour of mobile health screening for hearing loss in rural children and the effectiveness and economic value of telemedicine referral to improve access to specialty follow-up care.1Emmett SD Platt A Turner EL et al.Mobile health school screening and telemedicine referral to improve access to specialty care in rural Alaska: a cluster-randomised controlled trial.Lancet Glob Health. 2022; 10: e1023-e1033Summary Full Text Full Text PDF PubMed Scopus (1) Google Scholar The cluster-randomised trial was conducted in 15 rural communities populated almost entirely by Alaska Native people. Telemedicine referral more than doubled the percentage of children who received medical follow-up within 9 months compared with standard primary care referral (68·5% vs 32·1%); mobile health screening outperformed standard school screening for detecting possible hearing impairment; and both mobile health screening and telemedicine referral were extraordinarily cost-effective. This well-executed study represents a seminal contribution to the evidence base for telemedicine school screening, and it has potential to quickly translate to tangible reductions in health disparities for rural children. Importantly, the authors adhered to the principles of community-based participatory research, with equitable power sharing between academic investigators and community partners throughout all stages of study design and implementation.2Hohl SD Neuhouser ML Thompson B Re-orienting transdisciplinary research and community-based participatory research for health equity.J Clin Transl Sci. 2022; 6: e22Crossref PubMed Scopus (1) Google Scholar, 3Julian McFarlane S Occa A Peng W Awonuga O Morgan SE Community-based participatory research (CBPR) to enhance participation of racial/ethnic minorities in clinical trials: a 10-year systematic review.Health Commun. 2021; 22: 1-18Crossref Scopus (11) Google Scholar, 4Woodbury RB Ketchum S Hiratsuka VY Spicer P Health-related participatory research in American Indian and Alaska Native Communities: a scoping review.Int J Environ Res Public Health. 2019; 16e2969Crossref PubMed Scopus (11) Google Scholar I commend the investigators for their excellent work. This Comment focuses on two topics that pertain to navigating cultural and aspirational differences between government funded public health research and community partners. First, it is not clear that a cluster-randomised approach was necessary to answer the study's scientific questions. The authors invoke a pragmatic trial design intended to estimate real-world effectiveness that would occur outside of a research setting5Ford I Norrie J Pragmatic trials.N Engl J Med. 2016; 375: 454-463Crossref PubMed Scopus (657) Google Scholar, 6Zuidgeest MGP Goetz I Groenwold RHH Irving E van Thiel GJMW Grobbee DE Series: pragmatic trials and real world evidence: paper 1 introduction.J Clin Epidemiol. 2017; 88: 7-13Summary Full Text Full Text PDF PubMed Scopus (107) Google Scholar as their rationale for community-level randomisation. However, it is not clear why individual-level randomisation would not have been sufficient for this goal. Both randomised components, telemedicine referral versus standard primary care referral and mobile health versus standard school-based hearing screening, could arguably have been assigned to individual children within a school at a lower cost and with a smaller sample size.7Turner EL Li F Gallis JA Prague M Murray DM Review of recent methodological developments in group-randomized trials: part 1-design.Am J Public Health. 2017; 107: 907-915Crossref PubMed Scopus (77) Google Scholar The authors do not mention whether an individual-level design would have been logistically prohibitive or whether randomising individual children within a school would have introduced bias from contamination or interference between study groups.8Hudgens MG Halloran ME Toward causal inference with interference.J Am Stat Assoc. 2008; 103: 832-842Crossref PubMed Scopus (283) Google Scholar The analysis focused on individual-level outcomes, and it appears an individual-level randomised trial could feasibly generate the data needed to estimate benefits for the communities overall. The driving question should be whether the trial design is the most appropriate and most efficient to answer a scientific question, as opposed to whether it mirrors the conditions in which an intervention would be implemented in real life. Second, the authors did not explicitly locate their study in the context of Alaska Native health. The study was conducted in rural Alaska Native communities and the introduction describes profound disparities in hearing loss prevalence among Alaska Native children (31%) compared with the general population (2–5%); however, the study's conclusions are framed around the implications for rural children. The authors do not explicitly address Alaska Native health equity or discuss the potential for translation to other Alaska Native or American Indian community settings. My concern is underscored by the absence of the term Alaska Native from key parts of the Article such as the title, abstract, and research in context panel, reducing the likelihood that it will feature in future literature searches that focus on Alaska Native people. The authors noted that this omission was preferred by their community partners because Alaska Native and American Indian people are not a homogenous population and findings might not be generalisable to all Native communities. Tribal sovereignty and ethical integrity dictate, and rightly so, that community preferences are honoured.9Beans JA Saunkeah B Brian Woodbury R Ketchum TS Spicer PG Hiratsuka VY Community protections in American Indian and Alaska Native participatory research-a scoping review.Soc Sci (Basel). 2019; 8: 127Crossref PubMed Scopus (20) Google Scholar, 10Harding A Harper B Stone D et al.Conducting research with tribal communities: sovereignty, ethics, and data-sharing issues.Environ Health Perspect. 2012; 120: 6-10Crossref PubMed Scopus (121) Google Scholar On the other hand, this logic would also preclude broadly generalising the study's findings to rural children as a general population. However, this is how the authors frame their conclusions, elucidating the tension between honouring community preferences and undermining the justification for omitting the mention of Alaska Native people from key parts of the Article. I offer these reflections as a constructively critical contribution to ongoing discussions about design and reporting of community-based participatory research. I hope that the publication of this study will inspire future projects focused on translating and disseminating its findings to other rural settings, and that future investigators will be able find it in literature searches and use it to guide further research aimed at eliminating health disparities for rural Alaska Native children. I declare no competing interests Mobile health school screening and telemedicine referral to improve access to specialty care in rural Alaska: a cluster- randomised controlled trialTelemedicine specialty referral significantly improved the time to follow-up after hearing screening in Alaska. Telemedicine might apply to other preventive school-based services to improve access to specialty care for rural children. Full-Text PDF Open Access